A new plan...

and a big dose of reality. 

I finally had to come to grips with the fact that Abby can not be pushed.  She simply doesn't tolerate rate changes well.  My plan to bring her home without using the Broviac is just not going to happen.  We are only going to run regular IV fluids and not TPN, which was a compromise.  There was just no way for her to safely make this move without it.  We discussed every combination of formula and pedialyte that Abby could even remotely tolerate, and determined it just wasn't going to happen. 

She's simply not ready to support her self nutritionally.  I am definitely disappointed that we weren't able to wean the IV fluids.  She hasn't gone without them in six months.  I wish this time it could have been different, but it's not and we have to deal with it.  If there's a silver lining, it's that she's less at risk for having to go straight into the hospital when we get to NC.  The fluids will keep her above water (no pun intended) for a month or so.  We hope to have her set up with Dr.'s there by then and make decisions as they come. 

As the conversation went around with the Dr., pharmacist and social worker about a plan for home, I slowly began to understand that I couldn't take her home without the extra support.  I think they had all been waiting for me to come to that conclusion.  When it dawned on me, I asked Caitlin how long she had known that my plan wouldn't work.  "Almost from day one" she replied. 
"Why didn't you tell me?"  I asked
"Abby deserved the chance to try, and you needed to recognize that you have no control over this situation.  Now you know it's not because we didn't believe it couldn't work, but because it simply didn't work"  
Have I mentioned that I love Caitlin? 

I know we tried and her belly just doesn't work well.  Her x-ray showed a lot of air--which was no surprise because it's so distended.  She's been having a hard time with the feedings running right through her.  We were hoping the x-ray would shed some light on that, but it didn't.  A common problem with J-tubes is decreased absorption.  We may be having that problem with Abby.  There was nothing solid in the intestines, which wasn't what we'd hoped to see.  That might pose a problem because she won't get the nutrition she needs if this continues. 

The second biggest problem she has is her white count continues to be very low.  Today, she was around 2K (5-10k is normal).  She isn't demonstrating an appropriate immune response/recovery.  This concerns us all because she still has the central line and the risk of infection that goes with it, and because white counts are an indicator of infection for most people. Her low count delayed treatment for the line infection this time, and had she had a more serious bacteria growing, she could have been in a lot of trouble.  Even common illness's could be a big problem for her.  Luckily, that's a concern for another day. 

She should go home on Friday, THANK YOU LORD!!  I can not wait to get home.  They want to run her on the new program for a few days and repeat the labs before we go.  I'll admit it's a relief not having to think of rate changes tonight.  We can all breathe a little. 

Emily's appointment was rescheduled for tomorrow, so hopefully she'll get squared away too. 

This is all exhausting, but a plan is a plan...and I like a plan :)